Another newbie - information welcome

[Alex11]

Hello all. After 3 years of pain, getting up approx 10 times each night to use the restroom and more sprints to the bathroom and UTI's than I ever wanted - I was finally diagnosed with IC. Initially they thought it was all GYN related. I'm releived that they figured out what is was but a little unsure of what IC is. I don't think i received good information from my doctor about it.

Monday I had the cystoscopy that confirmed the diagnosis. I thought I had pain before but the procedure is causing me severe pain. Ouch - I try to avoid drinking so I don't have to have that painful urinating. How long will that last? The doc put me on Ciproflaxin for 5 days and also prescribed Phenazopyridine 3 x's daily for dysuria. I haven't been on it long enough to know if it's going to work. A friend told me about Prelief so I think I'm going to try that as well if i can find it at my local drugstore.

I see a lot of people talk about "IC Belly" and IBS. I'm not sure what the symptoms of IBS are but any gas pressure causes the IC pain to be significantly worse to where I double over in pain. As I've recently started Weight Watchers I KNOW I'm getting enough fiber so does anyone have any suggestions? I have the bloated belly for sure and anything to get that to go away would be a plus.

I have a follow-up appointment in a month. What type of questions should I be asking the Urologist? I definitely would like to know how long I'll be taking the prescription. Will it be indefinite or just temporary? There is just so much I wasn't told about IC and I want to make sure I go in with a list to get all my questions answered.

Any info would be greatly appreciated.

Sincerely,
Lisa

PEACE, LOVE and SOCCER!

[sandramac]

:welcome:HI Lisa welcome to the icn, you should check out the patient hanbook you will finds loads of info there.Feel free to post any questions you have .Someone here will be more than glad to help best wishes Sandra :grouphug:

[Alex11]

My initial concern (because of the pain) is about the Cystoscopy I had Monday. Should I still be having so much pain when urinating? The pain is pretty bad and when I eat or have any type of bloating the pain doubles me over. Should I be concerned or is this normal?

[Kara Isabel]

HI Lisa and :welcome:

Sorry to hear about the IC diagnosis! :( And the pain from the cysto! I haven't had one yet, I was diagnosed via the barbaric and painful PST :( But I plan on asking my new uro to do one. I think I have severe IC and/or ulcers :headbang:

Did they give you Elmiron? Or the other standard IC meds, Elavil, hydroxyzine? That is usually where they start treatment!

There is a WEALTH of information here on ICN and ICA. The best thing you can do is start the IC diet immediately:

http://www.ic-network.com/handbook/diet.html

And you can start figuring out what flares you and avoid those foods. Also, I found the book "The Interstitial Cystitis Survival Guide" by Robert Moldwin VERY helpful and it answered ALOT of my questions and gave me knowledge of various treatment option! You can buy that here or on Amazon:

http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Books-ICandOAB.html


Everyone here has been so helpful to me since my diagnosis in October! I'm glad you joined us! :D

[ICNDonna]

:welcome: I absolutely agree that the ICN Patient Handbook and the book, "The Interstitial Cystitis Survival Guide," are excellent resources and I encourage you to read both.

And I suggest you call your doctor about your pain. Any time we have an invasive procedure, it increases the possibility of developing an infection and it's a good idea to rule that out.

Warm healing thoughts,
Donna

[emilyrose197377]

:welcome:

[Alex11]

Thanks to all who replied. The pain from the cystoscopy is finally subsiding. Thank goodness! That was a rough couple days.

With all the information on this site, I'm writing up all the questions I have for my next visit to the urologist. I'm going to take the reins here and make sure I get the medical care we all deserve.

So thanks again to all who responded and pointed me in the right direction. You guys will never be able to get rid of me now.